01 Mar MARCH 1, 2013 | Having Everything and Losing Everything, Much Too Early
Having Everything and Losing Everything,
Much Too Early
by Carolyn Poirier
Alzheimer’s disease has been a part of my life for over a decade. It has taken the lives of many people close to me, in a long and painful way. The difference between this disease and any other terminal illness, is that the person is physically alive for many years after you’ve lost them; that I believe to be the hardest reality for the caregivers and family members. My grandfather was diagnosed first, and was my first real exposure to the disease. To me (at age 12) he was just a forgetful sweet old man, who over time became more and more disengaged. He was physically around for 5 years after the diagnosis but passed away before my final year in high school. His case was one of the kinder ones, relatively quick and his calm and happy personality shone through until the end.
A couple years later, my mother, Jane, in her early 50s, started exhibiting symptoms. At first it was a personality shift, problems driving and then deteriorating work quality. Her prominent public relations firm, Lewis Carroll Communications, which at one point in time handled large international accounts, including Vincor International, PMA, Tridel, and Virgin, slipped through her fingers. Her clients must have noticed her performance faltering. The formal diagnosis came a year later, and was met with a depression unlike anything else. The reality was; she knew what was going to happen to her, she had just seen her father-in-law go this way, and she knew there was no cure. It wasn’t a terminal sentence that gives the opportunity for closure, or where patients spend their last month’s basking in the sun and enjoying the company of those around them. She would live in denial for the first year, and then it would be too late for goodbyes, she would just fade out.
I was very angry and resentful when the disease started to take effect; why couldn’t she remember me or details of my life? The list of things she’s no longer capable of grows every day, and includes bathroom habits, eating, dressing, reading, writing… these items seem insignificant to me now. It’s been a year and a half since she understood I’m her daughter, and as sad as it is to say, I’m more comfortable with that.
The hardest part for me and my family is seeing her be constantly scared. In my mind she is a little girl, who needs protection and constant love. I see the frustration and fear in her eyes and it breaks my heart. For someone who was smart and outgoing to become so reserved, shy and sad, is really hard to comprehend. The next few months for Jane bring even more challenges, as she likely will be in a “home” by the end of 2013. She’ll be surrounded by other Alzheimer’s patients, who will be 20-30 years her senior.
Memory Ball was founded in part to pay tribute to her in the most fitting of ways, through a big party with dancing and an open wine bar (her favourite things). Memory Ball is my way of doing something positive, when there is nothing else proactive to be done for my mum. The realities of this are harsh, and the hopelessness gets the better of me sometimes. The key to surviving with this disease is your support system, and through an email I sent to 25 people, asking for input on an Alzheimer’s event, (Memory Ball) I was able to build one.
I miss her very much, and wish she was around to see what a success Memory Ball has become. She would have been exceptionally proud of each of the women on the committee, (with special mention to our Marketing Director, Kat, whom she mentored in her last working years).
My twenties have been altered dramatically, because of this disease, we [my family] live day to day. There are silver linings, I have become very close to my sister [Claire] and father. Claire and I constantly lean on each other for support and have a really good relationship. Our five year age difference seems insignificant now as we are faced with constant challenges at home. Furthermore, I have gained a sense of perspective and responsibility many twenty-somethings won’t inherit for over 20 years.
For those of you who haven’t lost anyone in this way, take a few minutes to talk to your grandparents and parents. Ask them about their twenties, what they want from life, anything, do things to make memories, because for me, not getting to know my mum first hand, will be my biggest regret.